Trouble Awaits if I Forget

I began this blog almost three years ago as a document of my daughter. At that time I knew nothing about advocacy, I knew only one Autistic adult though I’d read the works of the most famous Autistic people ~ Donna Williams and Temple Grandin. I assumed there were few Autistic adults because I believed what I was being told, that autism was an epidemic, and I feared it mightily. I had a few people, made up of close friends and family members, who began to read what I wrote. This blog was a place for me to write about how I felt and, while I tried to keep my feelings to a minimum and reported lots of dialogue and any progress I saw, I did write occasionally about how sad, angry, frustrated, scared and yes, sorry for myself I was. I never once considered how Emma might feel about what I was writing because Emma barely spoke, didn’t read (as far as I knew) and the idea of “presuming competence” was one I’d never heard spoken, let alone considered. Regardless, I tried to stay upbeat. I grew up in a WASPY enough environment to believe it was unbecoming to air one’s dirty laundry. In addition, I believed and still do, in the power of positive thinking. I wanted to feel hopeful, even though, it seemed to be in short supply.

As time went on and more people found this blog I continued to write about our life. I understood that having an Autistic child made what I wrote more interesting than had I been writing about a neurotypcial child. I never thought of it as an “opportunity” but I was certainly aware that I was being given a platform I might not have otherwise had. I wrote a number of posts where I agonized about what it was to be the parent of such a child. I saw nothing wrong with my thinking. *Those posts have since been removed. I do not post any photos or quotes without explicit permission.* Had anyone said to me then – can you understand that your daughter’s neurology is not “good” or “bad”, that Autism in and of itself cannot and should not be judged as a deficit, with those whose neurology is in the majority held up as good and enviable, I might have been able to hear them. But no one did say that. No one said anything remotely like that to me. Ever. Not. Once.

Had someone patiently explained the concept of “presume competence” and exactly why it was so important would I have been able to hear them? Had someone explained the relationship between depression, lack of self-esteem, how ALL children, whether they are verbal or not, whether they appear to understand or not, internalize what is said and thought of them, I probably would have understood. I might have even felt the surge of hope I was so desperate for and that I felt so many years later when someone actually did take the time to patiently explain these concepts. If someone went on to describe the problematic and ultimately destructive issues related to functioning labels I might have been able to comprehend, not right away, but I would certainly have found those concepts intriguing and would have wanted to know more. Would these ideas have been enough to change the trajectory we found ourselves on? I like to think the answer is yes. I am just grateful, enough Autistic people took the time and energy to explain to me when they did. These concepts are the basis for everything I do and think regarding Autism and my daughter.

Just a year ago, when I began to read the blogs of Autistics who were in their early 20’s, 30’s, 40’s and *gasp* 50’s my understanding changed radically and rapidly. I started to see that if I wanted a personal place to vent I could do so in a support group or in a personal journal, but that what I wrote about on a public blog or submitted to the Huffington Post was reaching far more than just a few family members and close friends. Things were easily misunderstood, my intentions were mistaken, the message I was sending was misconstrued. Slowly, slowly over time I began to realize just how skewed public perception was and how that perception was affecting public policy, the media, where money was being spent. I heard repeatedly how public perception played out in people’s lives. I became aware of how pervasive the inequality and injustice was and remains and I became determined to speak out about it. This was no longer just about my hopes and dreams for my children. This was about human rights being blatantly ignored.

And yet, all of this is tricky. There’s a huge danger of being seduced by one’s own ego. When either of my children become boosters for my self worth and ego I know problems will arise. When being a parent of an autistic child gives me a platform that I otherwise would not have available to me, I need to acknowledge that. Regardless of whether I asked for it, intended or even wanted that platform, I have to respect its presence. When being the parent of an autistic child becomes my identity, I know I’ve drifted away from where I need to be. My Autistic child is not “who” I am. That’s putting way too much pressure on any child, and it sets up an unhealthy and untenable relationship. Trouble certainly awaits me if I forget that.

Yea! I feel the same way about being autistic. My autism is an important part of who I am. It’s certainly something I live with every second of every minute. If I could take a magic pill and make it all go away, I’d so “No thanks.” (though I do take pills every day to manage some of the symptoms). But autism is not my primary identifier.I am a caring, curious, catalytic person. Those things (and others like them) are who I am first. I am so much more than my autism. I see many people active in the autism community whose identity is their autism – first and foremost. I think that is a troublesome example to set for young people (or anyone).

You are the parent of an autistic child. Other than that, you are normal. Your normal just happens to be being exceptional, dear friend. Yes, keep yourself in check, stay balanced, and…give! It is all good. ❤

Good post. Beautifully honest. I feel uncomfortable sometimes reading the blogs of people who parent an autistic child. It is so often about the pain, sorrow, difficulty etc.and I do understand the craving for support, as a newly minted autistic person, I get that. But sometimes it feels too negative, too voyeuristic, too ‘bandwaggon-y.’ There is a kid at the centre of all this angst. A kid who just needs to be accepted and loved exactly as they are, without a parent’s expectations burdening them. In contrast, your intelligent, honest thoughts are very refreshing to read. Thank you.

What you are doing is very important — for Emma’s future, for all of us. But you are right, it’s important not to lose sight of other things and not to let the opportunity to have an important voice take over and warp you into a shape you do not want to take. Thank you for reminding all of us of that as you remind yourself of it in this blog entry.

I also wanted to comment on what you said about Emma being aware before you even realized it. It reminded me of a quote I saw last night on Joel’s blog. It stopped me in my tracks and so I cut and pasted it to my personal quotes file. I think this is an important adjunct to “Presume Competence” and everyone who every interacts with a non-verbal or semi-verbal person (which would be …. everyone) needs to see this quote:

“Don’t talk to me like I’m an idiot.” — First words (at age 35) of an autistic man

Thank you for being you, Ariane (as if you could be someone else!) You are most definitely one of the gems that superbly enhance the medallion that is my life.

I see Emma’s Hope Book – in its entirety, as I have read every posting since its e-birth – as a testament to how honest, strong, and proactive you are. I don’t think that, in any way, you should be regretful of previous postings. They have shown such a transformative life process. They are so meta. If anything, I think the “storyline” of this blog, for lack of a better term, has probably benefitted more families, and changed more thinking than you can possibly be aware of.

Over the past three years of reading Emma’s Hope Book, I’ve found myself following the ENTIRE story of autism. Something that (sadly) so little is published, researched, or known about. I have learned more about the neurology of autism, what is is and what is ISN’T, solely based off of your writing and your research… and not just the writing and research that comes with acceptance. The earlier years and anecdotes have given me just as much to think about – about marriage, health, siblings, teenagers, personality, identity, love, differences, likenesses, etc. I wouldn’t trade following ANY of this journey. Just think about how incomplete the Zurcher-Long family story would be if people hadn’t had the prior knowledge of where the four of you started, and the changes that have taken place since?

I’m not sure I’m saying this succinctly or correctly. But I wanted you to know that I remember part of the reason you and I connected so much as people was because of a very innate similarity – the same sense of what we might have done differently in any situation. I can promise you that I, for one, am so inspired by everything you have posted – from things you have second guessed, to things that have been posted with certainty. With this blog, you and Richard have shared a family’s story handling all aspects of a different type of situation. And that has, in turn, made me, at least, look at the world in many different ways, and revised my thinking in so many ways.

I never saw you as “the person writing about her autistic child”. I saw you the person saying the things I am ready to hear only I thought I was the crazy one, readying this in my head, when society-at-large keeps telling me something else about who my kid is, something I never agreed with.

First time on your blog, fabulous post! My seven-year-old son is autistic. Upon his diagnosis (age 2), there was only scary information out there. I needed a lot of hand holding. There was too much fear. I too have been amazed, felt profound relief, and want to rejoice at the voices out there today – – the ones that champion differences as strengths. I only wish I knew more professionals and “autism experts” who felt the same. If I had the power, I’d erase the word “disability”. I’ve grown tired of it…